Understanding the invisible long term needs of men with prostate cancer receiving hormone therapy

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Meet Western Sussex Hospitals NHS Foundation Trust

Western Sussex Hospitals NHS Trust serves a population of around 450,000 across the West Sussex area.

The project was based within the Uro-Oncology Team at Worthing Hospital, one of 3 hospitals within the Trust, where locally there is a higher proportion of men over 65 years of age compared to the England average.

The Uro–Oncology Specialist nursing team consists of two nurses (WTE) and sees 520 new urology patients a year.

The team identified that men on hormone therapy had unmet need and wished to address this with a clinical nurse specialist role.

The big idea

A Prostate Cancer UK funded project was developed to address need related to effects of luteinising hormone- releasing hormone (LHRH) agonists, when specialist nurse support is limited.

The project addressed the often invisible needs of men attending hormone well-being clinics, and evaluated the support they received in the clinic and how the project could influence future commissioning in the area.

A nurse led hormone therapy wellbeing clinic was established with the aims of:

Identifying unmet needs

Exploring ways to support patient self-management

Evaluating the impact of a clinic

Informing future service commissioning

A holistic needs assessment tool was used to identify patient concerns and action plans were developed in partnership with patients.

Finding out what works

The project has enabled the team to identify unmet needs in this group of patients and to support men in self-management. It has also improved communication between primary and secondary care and ensured there is a standard pathway of care for men going through hormone therapy within the area.

Undergoing hormone therapy is bizarre, scary and seems life changing

- Patient

The holistic needs assessments undertaken with the men and their partners have benefitted both groups in terms of allowing a forum for discussion of concerns and anxieties, prioritising these concerns and developing an action plan.

The focus group enabled patients to discuss the ways in which they wish to be informed and supported.

Based on the findings from the Holistic Needs Assessment clinic all men now attend a hormone information seminar once they have commenced on hormones, to provide proactive information and support.

Lessons learnt

The main difficulty faced during the project was in trying to influence the future commissioning of services once the unmet need had been identified. Regularly presenting at Clinical Commissioning Group (CCG) meetings and facilitating the patient focus group jointly with them helped with this.

Outcomes

190 men were assessed using the Macmillan-developed electronic Health Needs Assessment (eHNA) tool which identified individual needs and wider themes of need. 86 partners contributed to this assessment.

60 men provided an evaluation and a patient focus group was held to identify how men felt their needs could best be met.

A hormone information seminar for men and their partners has been implemented as part of this role and covers the following topics:

Explaining hormone therapy

How am I feeling?

Diet and managing weight on hormone therapy

Prostate cancer and physical activity

This pilot confirmed unmet need in this group of patients with 158 identifying concerns greater than 5/10 on the holistic needs assessment measurement scale.

This project gives clear evidence of the positive impact of a nurse led clinic using a holistic needs assessment tool to improve patients' knowledge and ability to self-manage the long term effects of their cancer and treatment.

This work is now influencing how services can be commissioned in the area.

Find out more

If you would like to learn more about this project, please contact us.

Health and social care professionals programme

Building on the work of the National Cancer Survivorship Institute, we funded 59 health professionals based in the NHS and other health organisations to test new or innovative models of care to support men living with and beyond prostate cancer.